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Diagnosing Arthritis

18 replies

Pippin8 · 10/10/2015 17:07

DH (38) has had chronic joint pain for over a year now. He gets it in his fingers, wrists, knees & feet. It's stiff & painful in the morning & gradually gets better throughout the day. His joints do not swell.

However, he is never, ever pain free & has to take NSAIDS & paracetamol every day. If he doesn't he's in terrible pain & wakes frequently during the night. He's had bloods, all NAD except inflammation marker slightly raised. He's had an X-ray & ultrasound on his foot which showed nothing. He has just seen a consultant rheumatologist who did a thorough exam & more bloods but said the diagnosis was uncertain.

Where do we go from here, DH's quality of life is bad, he's not very active or mobile & his work is suffering. Would it be worth paying for a private MRI?

OP posts:
loveyoutothemoon · 10/10/2015 17:59

Can he persist for an MRI through his doctor? I did after so many years going back and forth and it was confirmed then.

Pippin8 · 10/10/2015 18:16

Yeah I guess so, it has taken a year to get to see a rheumatologist though. This may be a silly question, but would a diagnosis mean treatment? The rheumatologist gave the impression that even if tests were positive there would be no treatment as DH is young & they're all so harsh.

OP posts:
loveyoutothemoon · 10/10/2015 18:30

Get another opinion. And it depends on the type. I have osteoarthritis and there's no medication for it, but obviously can take painkillers. If it's rheumatoid there is treatment. What did they say about his markers being raised?

loveyoutothemoon · 10/10/2015 18:32

If his markers are raised there's obvious inflammation going on. Sounds like he needs to be assertive about treatment.

loveyoutothemoon · 10/10/2015 18:34

And markers aren't raised in osteo.

Pippin8 · 10/10/2015 19:34

They sent a letter Thursday saying his CRP was borderline the first time & slightly raised (19) the second time, which suggested inflammation somewhere. However, all other bloods NAD so left with an open appt. He tried to get in at the GP's to discuss it all on Friday with no luck.

But, as hes got an open appt with the rheumatologist, I wondered whether to go back to him? Although, he did say only go back if the joints are swollen or hot, which they aren't.

The pain must be bad as DH is not a moaner & hadn't been to the Drs for 8 years before this started last year. He used to run & ride his bike loads but now he can't even squeeze the brakes!

OP posts:
Bettertobehealthy · 10/10/2015 20:52

Hi Pippin8,
one of the possibilities , which may not have been checked for in the blood test is Vitamin D deficiency.

Did you get the blood test results,the actual levels , and also the ranges that are "normal" from that laboratory. Your husband is entitled to see them.

IF no test for Vit D was done , then I would suggest you get one. Joint and bone pain can be a symptom of deficiency. If he is low , then putting that right may resolve the problem , or may be the first step !

Please have a look at this thread , where many people have had some similar problems , it may well be of help.

    <a class="break-all" href="http://www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect" target="_blank">www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect</a>

   it is a long read , but there is lots of information, narratives, symptoms and results.   

     for a quick  blood spot test , you can send off to  an NHS  lab  here  <a class="break-all" href="http://www.vitamindtest.org.uk/" rel="nofollow" target="_blank">www.vitamindtest.org.uk/</a>  ,    it does cost  £ 28, but results are back in a week. 

Good luck.

Hope he gets better soon.

BTBH

loveyoutothemoon · 10/10/2015 20:52

I could be wrong but it sounds like rheumatoid. Does any of his family have it? So was the letter after he'd seen the rheumatologist? Normal levels are between 5 and 10. I would suggest speaking to a different doctor for medication.

Pippin8 · 10/10/2015 22:18

No family history at all. GP did initial CRP in April, it was 13, they told him when he rang for the results. He was also tested for gout then & that was neg.

Cons repeated it in September & also did CPP antibodies, vit d, rheumatoid factor & coeliac. Sent a letter saying they all came back NAD bar the CRP which was 19.

He's tried cutting out alcohol & certain foods to no avail. He's also starting walking as not as harsh on the joints as running & cycling. Nothing seems to improve the pain & stiffness. Although when his finger first started the GP thought it was trigger finger & gave him a steroid injection, that eased the symptoms for a few weeks. I just feel that 38 is so young to be like this, he may as well be 68.

OP posts:
wonkylegs · 10/10/2015 22:29

I would push for treatment or to see another rheumy - I started treatment at 19 for RA and I know plenty of people who started treatment younger.
My rheumatologist says that they tend to treat much more aggressively than they used to so that they can avoid long term damage and in some cases can get people back of the drugs or on minimal dosages. Yes the drugs can be nasty but they monitor them pretty heavily to avoid problems and they can if they get the right combination (this can take some time to work out unfortunatly but there is no single one that works for everyone) give you your life back.
Emphasise the effect the pain and stiffness are having on daily life and how he can't write off his life so young. Make sure he talks about it at his worst rather than putting on a brave face.

Bettertobehealthy · 11/10/2015 14:30

here is another idea which may not have been looked at.

<strong>Haemochromatosis</strong>   ....   a genetic condition whereby the body stores too much iron  , over the years,  it can result in joint pains, amongst other symptoms ,  at one time it was thought to be extremely rare.  We now realise about 1 in 250  people carry the genetic possibility  of developing it.

A serum ferritin test , if that is way too high combined with a high transferrin saturation test, could indicate something along those lines. A genetic test would confirm.

Two of many of the possible symptoms is arthritis in finger joints and in the first two knuckle joints, also a bronzing/tanned look to the skin.

Just an idea... !

It is eminently treatable, but should be treated early.

BTBH

Iheartjoshcharles · 12/10/2015 14:07

I think it might be worth trying for an MRI scan.

After a year in a really similar situation, a recent MRI scan of my ankles shows tendon damage. The consultant just picked one joint to scan and see.

I have no idea what this means for my other joints, whether it will help with a diagnosis or treatment, but its something after lots of negative tests.

I hope your DH gets some help.

Pippin8 · 12/10/2015 14:25

Thanks everyone, I have booked a GP appt for this evening & am going with him. I think the way forward is to push for an MRI & suggest paying privately if needs be. We've had some inheritance recently & I guess you can't put a price on your health.

Better, the cons rheumatologist was very thorough & he was tested for haemochromatosis & it was negative. I don't expect a miracle cure, just a diagnosis or a plan to move forward.

OP posts:
PoshPenny · 12/10/2015 16:04

Before you go down all the scary stuff route, try eliminating gluten from his diet and see if that helps at all. It's just that it did for me, and I had negative blood test result for coeliac before I changed to GF. I felt so awful I didn't think I had anything to lose, and it was awesome actually. To have hands and fingers that worked again, and not to be the same as the "evolution of man" pictures on that morning walk to the bathroom as I started the very painful process of straightening to upright.

Pippin8 · 12/10/2015 17:20

He's tried that & alcohol & meat Sad. He went down that route prior to seeing the rhuematologist.

The GP was a complete waste of time, says MRI will not help as ultrasound is better for the small joints like fingers. I pointed out the pain & stiffness was in one shoulder, one wrist & both knees also. So she said go back to rheumatologist then.

Poor DH is so deflated & in agony, with no answers.

OP posts:
loveyoutothemoon · 12/10/2015 17:42

Did he ask the GP for meds? If they won't help then his only option is to go back to Rheumy and persist.

wonkylegs · 12/10/2015 18:01

I have always found the Rheumys more helpful than the Gps for my RA. If he is still not satisfied with what they say when he goes back you are within your rights for a second opinion.
I originally had a crap rheumy but after several years of mediocre treatment I snapped when I had my son. I changed rheumy and it was a revelation. I know people who love my original Dr but I think he was very well suited to dealing with little old people and not so good at reacting to younger people with lives to live. My current Dr is fab at this and always considers how we can ensure I can do the things I want and need to do to get on with my life.

Sidge · 12/10/2015 18:14

An MRI probably won't show inflammation, only damage and structural changes.

Inflammation is best diagnosed with ultrasound I believe - I was diagnosed on the basis of ultrasound despite largely normal bloods, X-rays, seronegative for rheumatoid factor and a very slightly raised CRP (it's never really gone over 15). However symptomatically I was really struggling.

Go back to the rheumatologist - mine was excellent and persisted with investigations despite everything looking mostly normal. He said it was not normal that at the age of only 40 I couldn't brush my teeth for at least an hour in the morning as I couldn't grip the brush, and avoided shaking hands with people as it hurt so much.

He also insisted on going in hard with treatment to try and achieve remission to reduce the risk of joint damage.

Try again and tell him everything especially about not being able to brake, and how it impacts his life.

Good luck.

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